Posts Tagged ‘hypermobility’

Date: Sunday, May 16, 2010Time: 11:30am – 2:00pmLocation: San Francisco County Fair Building (Hall of Flowers) – Located in Golden Gate Park at the intersection of 9th Avenue and Lincoln WayStreet: 1199 9th AvenueCity/Town: San Francisco, CA

Please join others with Ehlers-Danlos Syndrome at this learning event focused on pain. Meet others with EDS and learn about some pain management options.

Taking Charge of Pain is a national, grassroots public awareness, community education and patient mobilization program developed by the Global Healthy Living Foundation.

The program will provide a better understanding of pain, treatments available for pain, and options and rights when seeking care.

Time: Lunch is served at 11:30AM. The event runs from Noon-2:00PM

RSVP Requested: To Register, please call (415) 932-0949 or submit the form at the bottom of

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We only link to publicly accessible entries and websites. If you would like your post removed from this newsletter please drop a comment below or e-mail us at: edsalert@gmail.com. Please remember when you’re visiting people’s personal blogs or diaries that these often contain information of a personal and sensitive nature and to respect their privacy and concerns. We only quote excerpts from articles that require subscriptions or paid memberships to access.

On Saturday May 1st 2010 the EDS support group will be putting on a conference that is not to be missed. We will have some incredible speakers coming to give information on a variety of problems that are associated with our condition. As well as meeting such valuable members of the medical community, it will also give you a chance to meet fellow EDS sufferers, something that is so helpful living in a world with so few of us diagnosed.

The Leicestershire Suite at Holiday Inn Leicester City has been booked for the Conference this year. This venue is the same as the 2008 Conference and is fully DDA compliant, has a large Conference Room and a PA System, while still in a central location with good road and rail links.
The cost for the Conference includes tea/coffee/orange juice with biscuits on arrival, a three course lunch and afternoon tea/coffee. Car parking is £5 for 24 hours.

National Car Parks have promised to cone off a number of spaces on the ground floor of the car park opposite the Hotel. When you arrive at the car park take one of the tickets on entering as normal. NCP will be sending some tickets which will tell the exiting machine that the price is £5. The relevant number of tickets will be sent to me and included in the wallet you will receive on Registration. When leaving the car park insert the ticket you took on entering the car park and then insert the ticket from the Registration wallet. This should then display the correct amount of £5 to be paid. This arrangement only allows for one entry and exit from the car park. If you leave for any reason in between then payment will revert the normal charge. If you stay longer than 24 hours your exit ticket from the wallet should still be inserted in the machine and the necessary adjustment will be made.

The planned programme includes presentations on the subjects of: Living with Disability, Podiatry Problems, Paediatric Gastro-Intestinal Issues – Parent/Doctor and Patient/Doctor Relationships, Paediatric Gastro-Intestinal Surgery, and Respiratory Problems in EDS.

In addition

+ a selection of EDS literature will be available plus Beanie Bears and EDS badges
+ a raffle will be held in the afternoon with tickets available through the day.
+ a number of members make cards and gifts for Support Group funds; please feel you can bring anything you have made.

The Conference aims to provide an opportunity for members to meet together, share ideas and support each other in addition to learning more about EDS. If you would like to come to the Conference, please let me know ASAP and I shall send you a booking form to complete and return ASAP. We have to give final numbers to the Hotel four weeks before the date of the Conference. We would hope to be able to accommodate everyone who would like to come but spaces may need to be allocated on a first come basis.

The Conference is a one-day event and accommodation is not included. Accommodation can be booked at the Holiday Inn Leicester City, Tel 0871 9429048 (room reservation from the options) at a special rate of £75 per room for Bed and Breakfast, please quote group code UUR. Booking is open now. Please note that the Leicester Holiday Inn Reservation Desk is open Monday to Friday between 8.30am and 6pm but unfortunately is closed at the weekend, and if you try to book during the weekend, your call will be diverted to the Central Reservation Office. Unfortunately, they will not have details of the terms we are being given or the group booking code.

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A new EDS related article was submitted to the American Journal of Medical Genetics. It argues that the clinical distinctions between Ehlers-Danlos Syndrome Type 3 (Hypermobile) and Benign Joint Hypermobility Syndrome (BJHS) should be put aside in favor of offering more timely and focused treatment to both conditions given the overlapping features/symptoms:

“It is our collective opinion that BJHS/HMS and EDS hypermobility type represent the same phenotypic group of patients that can be differentiated from other HCTDs but not distinguished from each other. Clinically, we serve this population better by uniting the two diagnostic labels. With this approach, we can strive to better define the phenotype and improve measurable outcomes of this patient population. Furthermore, we recognize that it is important that, in those hypermobility patients who develop potentially debilitating symptoms of chronic fatigue or polyarthralgia, whatever the underlying cause, there should be prompt and appropriate intervention [Keer and Grahame, [2003]].”
The article can be read here (with subscription):

We only link to publicly accessible entries and websites. If you would like your post removed from this newsletter please drop a comment below or e-mail us at: edsalert@gmail.com. Please remember when you’re visiting people’s personal blogs or diaries that these often contain information of a personal and sensitive nature and to respect their privacy and concerns. We only quote excerpts from articles that require subscriptions or paid memberships to access.

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Dr. Bird, a leading expert on hypermobility has written about the ‘Hormonal Aspects of Hypermobility.” As always, we will only be quoting excerpts from this article, even though it is now available online (see link below)

“Although oestrogen tends to stabilise collagen, progestogens loosen it. Many hypermobile patients, though not all, noticed a worsening in symptoms, more pain in the joints, clumsiness or a greater tendency to dislocate in the five days leading up to menstruation and in the few days after menstruation. This is exactly the time when the progesterone compounds far exceed the stabilising oestrogen compounds…. ”

Women who have increased pain during menstruation usually notice this after their period has become irregular which means that the estrogen/progesterone ratio may be off.

His suggestion?

Avoid progesterone only pills or “progesterone depo contraception preparations or … mechanical devices impregnated with progesterone.” But he also points out that this is not a one size fits all answer. Some women cannot take estrogen contraceptives, in which case he suggests trying a different kind of progesterone. More importantly, you need to discuss the pluses and minuses of your contraceptive choices with your doctor. Handing your doctor a copy of Dr Bird’s article would be a good start. If you live in the UK, the article is part of the Hypermobility Leaflet Pack.

And what about post-menopause when estrogen vanishes and the potential for pain increases? Will hormone therapy help in spite of the risks? “Since the oestrogen amount [during HRT] is very small…..[it] is often not enough to provide a protective effect for the joints.”